Painsomnia Unravels Me from Inside Out
It is 2 a.m. and I am awake. I sit on the couch with my head in my hands. The leg pain that broke my slumber is now extreme. I have taken my medications, used my topical, and applied heat. All to no avail. Exhaustion meets pain as my eyes begin to fill. Another night has gone. Quietly, I begin to cry.
This is painsomnia.
Painsomnia refers to insomnia due to pain. The constant interruption of sleep is debilitating. Without adequate resources to fight pain, we flail. Our days become extensions of sleepless nights. The cycle perpetuates ad nauseam.
This is my life.
I have somehow adapted to the deprivation. While not ideal, it is my reality. Sometimes I fall asleep without issue. But the bewitching hour is never far behind. Other times the pain prevents me from ever falling asleep. These all-nighters exacerbate my already elevated levels of fatigue. I become the walking dead.
My legs are my archenemy. They burn and throb and are impossible to ignore. I have spells that last for hours. While I have medications to help, their efficacy is short-lived. More relief requires sedating medications throughout the day. Rest would come at the cost of daily productivity and purpose. That is too high a price.
There are nights when I cry out in sheer frustration. I revert to an infant and crave comforting. My body is waging an internal war and I suffer the fallout. Tears are often accompanied by primal, exhausted moans.
Painsomnia is debilitating. It unravels you from the inside out. It wears down every fiber of your sanity and being. I am so often caught up in battling symptomology that I wonder whether the cycle will ever cease. I do not know. I do know there are tools that might help. I encourage you to talk to your neurologist. Mine illuminated the importance of relaxation techniques alongside proper sleep hygiene. Proper nutrition and exercise can also help your body prepare for a restful night.
Painsomnia has proven to be one of the most difficult aspects of multiple sclerosis for me. Yet in the absence of sleep, I will continue to dream. For dreams are a necessity. And my dream is bigger than painsomnia.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Jennifer Humphrey
Jenn, my eyes filled immediately with tears, because through the sheer honesty of your words...I feel your unrelenting 2:00 a.m. utter despair; I feel it so deeply. It breaks my heart that you, so loving, giving, caring & talented, are suffering. You always show us your strength, honesty & bravery—especially by sharing your vulnerability. You never pretend- never write or fake “all is great” if it’s not. You find gratitude for Abby, your loving family; & how you’ve grown in wisdom since your diagnosis, & reach deep down inside to feel many blessings & you lift us all up & I respect you enormously for that & more. Jenn, THIS column is so sheer, so piercing! It is perhaps the best of your many excellent columns. I don’t have MS, but you must surely know by now how much I feel intense empathy, for you & for the many others who suffer. I don’t have enough words to tell you how much your agonizing, unrelenting painsommnia is heartbreaking. I would give anything for you to have restorative sleep! I can’t tell you how intensely your words, your columns have affected me. I know, I feel, how your openness comes from deep inside your body, mind & soul. I would give anything if God, if medicine could bless you & keep you; & give you relief from your horrific, unfair painsommnia. Much love from us... & I’m often awake at 2 am... so when it’s this bad, & you’re sobbing in despair —please feel free to just tell me...even if you are in too much pain to “talk” at length. I am here for you, as you have always been here for me. Sending you hugs, prayers, always. ...(& I’m assuming gabapentin doesn’t help if your pain meds, other therapies aren’t either. Muscle relaxers? Probably not.) And YES, you want & NEED to be present in your life- not in a daze, a haze. Your life is meant to be shared. One of my favorite poems begins with “This time called Life is meant to be shared...” But IF the painsommnia gets too bad, pls take the meds if you feel ok about it. I trust & believe God doesn’t want you to be in this horrible sleepless unrelenting pain, this despair... ???
Carolyn Walsh, MSN, RN
I was in your place for almost 5 years. I can really relate to your words.
I went to one pain medicine practice for over 2 years. Then I went to another pain practice, down in the city of Philadelphia.
In almost 2 years, they had achieved a stability for me, a pain level down to a "4" most of the day. The pain was never gone, but I could have a life.
I hurt in my Left behind, of all places, but it's from the MS.
So all in all, I was in debilitating pain for over 5 years before they found a combo of drugs that could lessen it.
My prayer for you is that you can find someone and something to lessen yours, in order to have and live a life.
Jennifer Bodurtha
I didn't sleep at all last night. Fortunately, don't have pain. Have had MS for 31 years, and can still walk with a walker. But don't go far. Meds are tysabri, and an oral but forget name. Make your diet better, less than 10 grams of saturated fat/day. Very doable! Research supplements to incl D, B12, Omega 3.
Glenda Shine
Thank you for this!
We often suffer in isolation and it does help to read and know that we are not the only one who suffers through exact situation.
My husband recently was angry to find out that I was taking anti-depression medication for my pain. I cry out “That’s because there is nothing else for nerve pain!”
As researchers are battling to find “The Cure” for MS, it would be great if they were also looking for better ways to help with our symptoms!
I stopped taking the medication to assist with my bladder problems when I learned it fell into the category of drugs that cause dementia! Just what we need with our brain loss!
Karen
I am so sorry for you.
Karen
Tim Miller
Have you tried Lyrica (Pregabalin) for neuropathic pain relief?
I've been using it for quite some years now with very good results.
Tim M
Cindy
This describes my life exactly. I dread going to bed at night, knowing it will be a battle rather than a time of rest and rejuvenation.
Although my MS comes with a myriad of issues, if I could find a solution to this one, it would be life-changing!
Nina
Dear Jennifer,
I cry with your narration. I feel identified. I do not have MS, but sponlyloarthititis. I am about 40, have 1 child, expat. It is a year and half now since got sick. Getting to adapt to the deprivation of sleep, as you say. But I still cry sometime from frustration, feel zombie in the morning and deal with the daily feeling of guilt with the whole world that surounds me. Sometimes I am so unproductive in the mornings. I do not want to try to sleep, either to work. My mind wants a scape to listen music or whatever, or simply waste time looking at the screen. And everynight, I feel anxious when the time to go bed comes. Sometimes medicine works and I wake up a few times, move to release stiffness in the bed and continue sleeping. Somtimes, no matter how much I fight to force myslef to stay, it is impossible, I need to fully wake up, walk, stretch, look for medication, at the end nothing. I do not sleep. All over again. Sleep deprivation goes beyond feeling exhausted and not present for the beloved one and obligations, it comes with a big unverable feeling of guilt of not functioning as oneself and the others' expect. When I see people with much more debilitating conditions, I feel guilty of complaining and crying. I say to myslef, just count your blessings, it is just pain, it is just lack of sleep, it is just ..... I try so hard to ignore. I guess a year and half is still soon. Need more time.